Guillain-Barre Syndrome Can Go From Bad to Worse… and Very Quickly!
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Guillain-Barre Syndrome Can Go From Bad to Worse… and Very Quickly!

Guillain-Barre syndrome, or GBS, occurs when the body's immune system attacks the nerves. People will usually notice tingling and weakness in their arms and legs. As annoying as that can feel,…

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Can Nutrition Cure Sickle Cell Anemia? The Nigerian Government Thinks So
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Can Nutrition Cure Sickle Cell Anemia? The Nigerian Government Thinks So

According to recent research, the Nigerian federal government believes nutrition is another way to approach treating and potentially curing Sickle Cell Anemia. Dr. Ogbonnaya Onu, Minister of Science and Technology, explained…

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A Patriotic Man Returns to Running a Marathon After Trigeminal Neuralgia Brain Surgery
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A Patriotic Man Returns to Running a Marathon After Trigeminal Neuralgia Brain Surgery

This year, there were about 5,000 runners in the Myrtle Beach Marathon. Trigeminal neuralgia (TN) didn't stop Greenville, North Carolina’s Melvin Coleman from being among those who ran relay races,…

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This Mother’s Amazing #showusyourshoes Campaign for Friedreich’s Ataxia
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This Mother’s Amazing #showusyourshoes Campaign for Friedreich’s Ataxia

Leah Alstin has a rare disease called Friedreich’s ataxia. Friedreich’s ataxia is a disease that progressively damages and affects the nervous system. Poor coordination is one of the early symptoms…

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monARC Bionetworks’ Data Sharing Could Benefit the Rare Disease Community
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monARC Bionetworks’ Data Sharing Could Benefit the Rare Disease Community

Scientists aren’t always the best at sharing amongst themselves. But sharing data could mean accelerated research. By making your own data available to scientists you can help contribute to a…

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Got Primary Immunodeficiency? Get Out of Town in July, Teenager!
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Got Primary Immunodeficiency? Get Out of Town in July, Teenager!

Chances are if you have a primary immunodeficiency disorder, you don’t live near other teens with your same diagnosis. No one else gets what you’re going through. You may have…

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If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation
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If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation

Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you a general overview of the disease.…

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